Adhesions are bands of scar tissue that can form inside the body, binding internal organs together...and leaving the victim to suffer incredible pain. Since adhesions elude the eye of standard medical tests, and many doctors do not discuss the illness itself, a proper diagnosis of adhesions, or ARD (Adhesion Related Disorder), is often left up to the sufferer!

Adhesions: The 93% Factor

Adhesions and adhesion related disorder affect many lives, though most people have never heard of adhesions. Adhesions are said to be one of the best kept secrets of modern medicine today. Unfortunately, many who are aware of adhesions continue to believe this problem is a rarity; one that happens infrequently. Statistics prove otherwise. The idea that adhesions are an uncommon occurence of surgery is one that is often perpetuated by the medical world itself.

Sufferers of this disorder often parrot the words of their doctor: "I just make adhesions." "It's just my body." Once one delves into the study of adhesions, however, one will find information that conflicts with the theory that the patient is to blame for adhesion formation. The truth is: Anyone can develop adhesions. Adhesions do not play favorites. No one body "just makes adhesions." This is a fallacy, yet a doctor may rely on this explanation simply because it is easier to blame the patient than admit the problem arose after a surgical procedure. Because most people trust their doctor, they leave his or her office with the belief that their own body has betrayed them.

Looking back in old files, I found the story of Robin Leeling Hale that was published in 2006. She was thrilled her story had been published, as she wanted to bring public awareness to this insidious disorder. As with many other articles, the doctor in this article erroneously states "There's currently no good way to predict which patients will develop problematic adhesions after surgery...." Robin's story clearly debunks the theory that one's body just makes adhesions. Though she may have been told by her physician that adhesions developed due to her own genetic makeup or DNA, adhesions developed after her appendix was removed during a surgical procedure.

Robin's story was published in the World Herald on Sunday, September 24, 2006.

Scar tissue can create lasting problems

BY NICHOLE AKSAMIT

WORLD-HERALD STAFF WRITER

Countless X-rays, scans and medical tests. Years of debilitating pain, nausea and bloating. Partial bowel obstructions. A divorce and a lost job. Seven abdominal surgeries. Weeks in an Ohio hospital, on the brink of death.

Twenty-six-year-old Robin Leeling of Omaha never thought having her appendix removed seven years ago could possibly lead to this. Like most people, Leeling hadn't given much thought to adhesions, a kind of scar tissue that can form after almost any surgery.

It's not something she recalls her doctor mentioning. She was young. And scarring is part of the body's healing process. But for people who scar easily or aggressively, as Leeling did, even minor surgery can lead to major problems. And, anecdotally at least, the number of people showing up in emergency and operating rooms with adhesion-related disorders, or ARD, is on the rise.

Severe internal scars - known as dense or type 2 adhesions - can impede or connect normally free-floating tissues and organs. They can cause chronic pain, infertility and life-threatening bowel obstructions. They also can delay or complicate future surgeries. Leeling said it took years for doctors to discover the likely cause of her chronic pain and recurrent bowel problems: dense adhesions attaching her intestines to her abdominal wall.

She thought laparoscopic surgery to remove the scars, detected two years after her appendix was removed, would be the end of it. But the surgery in 2001 offered only temporary relief. In a few months, Leeling's pain returned and worsened. For the next three years, she went from doctor to doctor, seeking answers. X-rays, CT scans, a colonoscopy, and upper and lower gastrointestinal studies offered few clues. But Leeling was nauseous and bloated. Pain ripped through her abdomen when she walked. Some days she couldn't leave her bed. Medication and dietary changes eased her pain sometimes but didn't solve the ongoing problem.

"I had doctors tell me it was IBS (irritable bowel syndrome), depression, stress and - bluntly - that I was going crazy," Leeling recalled. "But I knew there was something more to it." Although her employer was understanding, Leeling's frequent medical absences cost her her job. Her already-eroding marriage dissolved. She wasn't well enough to play with her young son. Though she was still in her 20s, she even considered a hysterectomy after one specialist hypothesized that her pain might be gynecologic.

Diagnosing ARD can be difficult, said Dr. Armour Forse, chief of surgery at Creighton University Medical Center. Adhesions often don't show up clearly on medical scans. "And even if the adhesion is there," he said, "there's no (simple) way to equate a patient's adhesion with the pain. So you try to rule out other things. The work-up can be very extensive."

Medications to help manage chronic pain can lead to other bowel problems. Worse yet, in people with severe adhesions, surgery to confirm or remove the rubbery bands can cause more scarring. Doctors may advise against surgery unless or until a life-threatening complication - such as a total bowel obstruction - arises. Patient advocates, researchers and pharmaceutical companies are hopeful that greater use and newer evolutions of adhesion barriers - special coatings applied to organs and tissues during surgery - will keep more patients from developing problematic adhesions. Perhaps the most widely known - a dissolving plasticlike sheet called Seprafilm - has been shown in studies to minimize scarring and subsequent adhesion-related surgeries for some patients. Others have received FDA clearance, and more are being tested.

But such barriers haven't yet proved useful in all surgical areas. And it's unclear how many surgeons routinely use them. Omaha colorectal surgeon Dr. Maniamparampil Shashidharan said adhesion barriers are available at every Omaha hospital, and he uses Seprafilm routinely on his colorectal patients. But several hospitals contacted said they don't have policies requiring or advocating use of adhesion barriers and didn't know how often surgeons used them. Adhesions can form anywhere in the body, but those severe enough to prompt hospitalization frequently are associated with abdominal and pelvic surgeries.

About one in four patients are hospitalized for adhesion-related complications within a decade of their first pelvic or abdominal surgery, according to a large study funded partly by the maker of an adhesion-minimizing barrier and published in the Lancet in 1999. There's currently no good way to predict which patients will develop problematic adhesions after surgery. "Some patients develop dense adhesions," said Shashidharan. "Some don't develop any at all. I don't think anybody knows why." But an increasing number - most of them women - are showing up in ERs and ORs for treatment, said Dr. Richard Schlanger, a general surgeon and director of the Center of Advanced Wound Management at Ohio State University Medical Center. His center has become something of a magnet for patients with adhesion-related problems.

"Basically we got involved because of the vast number of people coming in with multiple complaints of distention, nausea and vomiting," Schlanger said. "We found a common thread: In almost all these patients, they had had some gynecologic procedure or series of surgeries that preceded the pain." Schlanger said minor or type 1 adhesions are thin and filmy, like strands of a spider's web. The more problematic type 2 adhesions are like thick rubber bands. He said they tend to form after intense procedures, where there is bleeding or rupture, heavy handling of internal organs, contamination of the surgical site or anything that can cause a spike in inflammation. They can tug and torque normally free-floating structures - such as the colon and small bowel or a woman's uterus and Fallopian tubes.

Schlanger said type 2 adhesions can develop their own blood supply and nerve fibers - one reason they may cause pain even when there's no obvious bowel blockage. Forse said he wasn't aware of any research showing pain receptors in adhesions. But a small study published in the Annals of Surgery reported evidence of nerve fibers in peritoneal adhesions as early as 2001. As awareness of adhesion-related problems grows, Schlanger said, more patients and physicians are connecting complaints of abdominal pain to fallout from previous surgeries.

Leeling only wishes she or her doctors had been able to connect the dots sooner. It wasn't until 2004, three years after Leeling's first adhesion-removing surgery, that a Lincoln obstetrician explored her abdomen with a laparoscope and found the likely cause of her pain: more adhesions in and around her intestines. Adhesions had prevented part of her colon from pushing stool along. Part of her bowel died and had to be removed.

"I think I actually had a partial bowel obstruction the entire time," she said. Leeling said she's spent much of the past few years working to manage her pain with medication, diet and more procedures to relieve partial obstructions. Laparoscopic surgeons in Omaha used an adhesion barrier called SurgiWrap after a surgery in March, but Leeling's pain quickly returned. She's hoping her seventh and most recent abdominal surgery, performed by Schlanger in Ohio last spring, will relieve her a bit longer. She chose Schlanger because he has treated a number of adhesion patients, uses Seprafilm and came recommended by Anthea Nesbitt, the Ohio co-founder of an adhesions support group called Bombobeach.

Leeling was so malnourished and dehydrated when she showed up in Ohio that Schlanger kept her in a hospital bed for 10 days trying to rule out other problems and improve her overall health before attempting the surgery. In surgery, Schlanger and his team found adhesions partially obstructing Leeling's bowel in several places and inflammation throughout her abdomen, something Schlanger suggested might have been a reaction to the SurgiWrap. The surgical team pulled out and picked through her intestines, slicing off adhesions and damaged tissue. They lined her colon, small bowel, pelvis and abdomen with sheets of Seprafilm before sewing her back up. Schlanger hopes the barrier "basically will become a liquefied lubricant and just keep the bowel from sticking together."

Leeling still has bad days and says she'll probably have residual pain and bowel problems for life. She may even require more surgery. But she said she felt better after the Ohio surgery than she had in years. "Ever since, she's like a lion out of a cage," said Leeling's mother, Lois Givens. "She's got so much energy. She's trying to spend time with friends. She's taking her son swimming and for walks. And she hasn't missed a day of work since we got back to Omaha."

She's also become an advocate for adhesion awareness. She's asking local hospitals about their surgical policies and use of adhesion barriers. She's written state senators in hopes of getting adhesion-related problems recognized as a disorder in Nebraska, so that people disabled by adhesions can obtain government assistance. Leeling said part of her renewed energy comes from finally having a doctor acknowledge that adhesions made her deathly ill: "Now I'm showing everybody the OR report. It's like: 'See? I'm not making it up.'"

(Side note) Hey, Doc . . . If you're planning an abdominal or pelvic surgery or expecting a baby (in which case, an emergency Caesarean section is always a possibility), you may want to ask your surgeon or OB-GYN:

What's the likelihood that I'll develop problematic adhesions as a result of this particular surgery? What techniques or barriers, or both, will you use to minimize my risk?

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DISCLAIMER

The information found on this website is to share the personal story of my daughter's trying journey with Adhesion Related Disorder. This website is designed solely to: inform, educate, and shatter the silence that surrounds the illness of adhesions, or ARD (Adhesion Related Disorder). The postings within this site are the opinions of the author and/or guests who post here. No content of this website should be construed as medical advice. This site does not provide medical advice. Please consult your physician for all matters concening physical and mental health. 3/14/07